Transition


I found out that Easter Seals House has WIFI – it just does not work in our room. I can sip my instant Starbucks in the common area on our floor and blog. We are in a transition time now. Ryleigh has been out of the hospital for 24 hours now.
At first she was not to be discharged until Monday, February 4th but they cleared her and needed the bed for another patient. Ryleigh was excited to leave the hospital but sad to leave the wonderful caregivers that have helped her so much. This is a picture of her “favourite” nurse – her name is Mary. She was the nurse who advocated that something serious was wrong with Ryleigh’s leg and urged the doctor to get an ultrasound. She also made sure that Ryleigh was not told too much and seemed to explain things to Ryleigh in such a safe way that her anxiety was reduced. I learned a lot from her.

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Ryleigh’s symptoms have left the doctors a little baffled. They seem to think that it is connected to an inflammatory disorder of some kind. It could be a very serious flare of her Irritable Bowel Disease, or IBD with something called vasculitis, or even a blood disorder. We may never know but I am glad she is recovering so well right now.

I am still tentative as I am the only person she to catch any new symptoms. I am a bit hypersensitive but know that I need to be until she is cleared from each of her symptoms: clot is about 3-6 months (second ultra sound in 3 months to see how much of the clot has dissolved, inflammation of her brain (watch for new signs and next MRI in 3 months, IBD (Crohn’s/Colitis) — 7 weeks until off of prednisone and then time will tell if the Remicade has truly worked (3 months or so is my guess).

My biggest concern is bleeding as she is on the blood thinners right now. She has had one nose bleed and I am most concerned about her IBD relapsing and her bleeding internally. That will be a bit trickier to notice but she is aware of telling me if she feels faint or has any other signs.

The goal now is to have Ryleigh try to regain her strength. Right now her hemoglobin has risen thanks to the infusion but it is still very low….her stamina is not the greatest so she needs lots of rest breaks. Yesterday we were out a bit waiting for her prescriptions and she could only take about an hour and then she had to find a place to sit…no lie down….okay sleep. She slept here for over an hour!

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Ryleigh has decided that her two favourite restaurants right now are IHOP for breakfast and White Spot for lunch or supper. It is nice because each is only a 10 minute bus ride from Easter Seals House. She gets some exercise and something to eat. Today we had breakfast with my sister Jennifer. Jennifer came from Prince George to keep us company and it was great to spend time with her. Ryleigh loves the White Spot at Oakridge, this her diving into a yummy dish of chicken pot pie …isn’t her smile great!

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Tomorrow we are going to ride a bus down to a store where Ryleigh saw a butterfly decorated cane. She is finding her left leg sore and weak and begrudgingly thinks a cane will help her for now. She is embarrassed but thinks in the long run it would be better for her. She is in quite a bit of pain still and finds it hard to walk too far.

We are adjusting to our temporary home. We have a couple of pots and a double burner stove so we can make some food in our little room. The bus is right outside that takes us to many different places if need be. I will try to get Ryleigh out and about to improve her stamina and muscle movement. If anyone in the lower mainland has ideas of places we can go for outings let me know. Right now short transit trips with some walking are all that Ryleigh can do. Much easier to do here then if we were up in Vanderhoof. Although Ryleigh is getting better I have to remember what she has been through the last while. She needs to rest lots and have lots of downtime. I will try my best to rest as well but find that my anxiety is still quite high as I am unsure that everything is better. One of the doctors reminded me that having a chronically ill child means that things do not always get fixed they just become stable. Hmmmm….have to think about that one….whole new understanding our reality.

About WiseMindedLiving

Mindful living and a thoughtful attitude are the focus for Johanna as she navigates the paths of life that are sometimes daunting. Her journey as a mother and educator are interwoven as they are the primary motivators for her stories, reflections, and wondering.

8 thoughts on “Transition

  1. LOVE the picture of Ryleigh smiling! Yay that Aunty Jennifer is down for a visit. So good to see a more Ryleigh-like picture. Jo, you are so in tune with your girls anyway, so I know that you will be vigilant. It is rather intimidating to leave the cocoon and safety of having the medical care right there. We miss you, but are glad that you can be there with (hopefully!) drier weather. Good for Ryleigh being willing to use a cane for assistance, and glad that she saw a pretty one that makes it more pleasurable for use. :0)

  2. hi. am happy to hear the positiveness in your blog and also respect your ability to recognize how you feel. she is an amazingly mature young lady. she has handled this quite well and you should be very proud of ryleigh and chloe, and the fact that they are your daughters! love you guys.

  3. I am thinking of you and appreciate the blog. Thanks for the pictures, it is so great to see Ryleigh smiling. Jo, you are a remarkable mother with two amazing daughters. Sending much love and best wishes.

  4. I hope Ryleigh’s ‘stable’ turns to even greater ‘strenghth’ sooner than later. It is so good to hear she is eating and so good to see her smiling! Wishing you lots of fun excursions in the city with your girls, as well as some time to take care of yourself Jo!

  5. What a BEAUTIFUL smile indeed!! So happy to hear of the improvements, Make sure you take care of yourself too Ms. Johns! Miss You

  6. How about a trip to Lonsdale Quay in North Van? Transit to Oakridge and take Canada Line to Waterfront then Sea Bus to the Quay. Have lunch there or just sit outside and people/bird watch. You might want to check with someone about how much walking there is between the Canada Line and the Sea Bus – I think it was a 3 or minute walk within the station.
    Or if you’re all readers the Vancouver Public Library is a great place to spend a few hours, especially if it’s rainy. The #17 bus stops about 240m from the Library.
    Glad to hear things are going better.

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